Tag Archives: trusting God

Central focus.

This weekend was beautiful. As I stepped out on the back patio, I could feel it. It was the start of Fall weather. I know it is not official until next Sunday, but the change seemed to shout out in the morning light, brisk air, and the first of colored tips in the leaves:

“A new season has arrived.”

I sat in a coffee shop last night with a friend. As our conversation flowed, I mentioned that I have been struggling with self-control (more priorities) of how I use my time. From the time I get out of bed, my days are usually pretty routine. Then these last two weeks, I seem to have lost that routineness. I seem to be all over the map of “to-do” lists of little details or projects needing attention, the weekly home visits by OT/PT, calling family on my new Cap Tel as I try to recapture the time of lost conversations, squeezing relaxing time in to read, or responding to emails which can take a bit of time. The end of the day comes and after all the business of accomplished things, I feel like I haven’t even left the dock. My focus meanders…

It is hard to discern what I need to be doing as I feel I fight against time of my declining body.

“I just don’t really know what to write about,” I say to my friend. Not that I am out if words or post ideas, but each day seems to bring about more change that I don’t know where to start. In the same manner, I see a parallel to my time studying the Word and in prayer: Unsure of the direction I am to take, as some doors have opened and others have closed.

I wrote last week about leaving room for “God Room.” It cannot hold nervousness leading to worry and doubt, but I let mine sneak in through the crack beneath the door. It distracts my focus, my desire of complete surrender…and I need to refocus on the promises that God is with me in every season: especially the ones that bring about change.

As Fall approaches, I anticipate its beauty. Shouldn’t I anticipate the same beauty within my own season of change?

God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.

Ecclesiastes 3;11, NLT

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Leaving room for “God Room”

In the Gospel of Mark, chapter 2, Jesus is continuing his ministry of teaching the people and performing miracles. At Capernaum, Jesus was at a house where the crowds of people came in at so much abundance that there was no room to get into the house, let alone by the door.

There were four friends who had a lame friend. Because they could not get through the main entrance, these four friends carried the lame friend to the roof, made a hole in the roof, and lowered their friend right to the feet of Jesus. Seeing their faith, Jesus healed this man both spiritually and physically:

Which is easier to say to the sick man, ‘Your sins are forgiven,’ or to say, ‘Get up, take your bed, and start to walk?’ I am doing this so you may know the Son of Man has power on earth to forgive sins.” He said to the sick man who could not move his body, “I say to you, ‘Get up. Take your bed and go to your home.’” At once the sick man got up and took his bed and went away.

Mark 2:9-12a, NLT

Today, childhood friends from my hometown, sister and brother-in-law, and friends from college days walked the Children’s Tumor Foundation NF Walk in Denver, Colorado. Their walking as a team and raising support on my behalf for the foundation and its future research made me think of the four friends of the lame man. They walked with the same hope as any persons living with a disease: that someday there will be a cure. Right now there is no cure for my disease (that circumferences NF1 as well.) Sometimes these walks for diseases seem so helpless in the bigger picture of the dying world, but what matters is keeping the focus on a hopeful future found in Jesus Christ.

But it is easy for me to lose sight of hope when all I see everyday is my body aging away. I don’t even know what to pray for at times. I know God has given knowledge and wisdom to countless research teams and doctors across the world to help patients such as myself;  I am very thankful for my team of doctors and therapists and trust their guidance. But even they can only do so much. It is our human nature. It is where “God Room” comes into faith.

I just finished Franklin Graham’s autobiography, Rebel with a Cause: Finally Comfortable Being Graham. I know I am about fourteen years behind from when it was written, but I am glad I took the time to read it as it taught me a few lessons in life and faith.

In one of the chapters, Franklin accompanies his friend Bob Pierce–founder of Samaritan’s Purse–on a world tour to see first hand the work that Bob ministered through Samaritan’s Purse to the hurting, sick and needy around the world by helping assist missionaries already in the areas. During the trip, Bob tells Franklin of leaving room for “God Room.”

‘God Room’ is when you see a need and it’s bigger than your human abilities to meet it. But you accept the challenge. You trust God to bring in the finances and the materials to meet that need.

I thought about this in my own life. With starting Physical and Occupational therapy a lot of my mindset has been, “These are things I can no longer do easily on my own or at all on my own.” It gets frustrating. So last night, I prayed for “God Room.” I didn’t go through my whole list of things wrong in my body. I figured God already knows that…but what I focused on was trust–trusting that God would (will continue) to meet my needs–both physically and spiritually. My physical condition is out of the ability of myself and doctors…but not out of God’s ability. With Him all is possible…and that means the “God Room” is pretty big!

*Graham, Franklin. Rebel with a Cause: Finally Comfortable Being Graham. Nashville: (Thomas Nelson, Inc., 1999.) Page 139.

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Two months ago…

Yesterday marked two months of taking the chemo therapy, Sirolimus. Seeming like we had just made the trip to Children’s Hospital in Cincinnati, Mom and I embarked on yet another early morning drive. (And that was sarcasm…we literally had done the same routine on Friday morning for my MRI.) The only differences were (1) traffic–yesterday reminded me of why I don’t miss city driving; and (2) Friday I could drink coffee on the drive down–I could yesterday but not until after my lab work was drawn. I am very thankful for my Mom’s driving as I would have never made it on my own yesterday morning.

Yesterday’s appointment covered a LOT of things. We discussed my walking and balance, PT and OT therapy, the need for ankle braces, driving and safety, better communication methods for me between the team of doctors, and a few fun things like my paintings. 🙂 My initial intent was, as always, to blog the details and keep you informed on the latest like a news anchor, but I don’t think that it is best to do that this time. Everything is changing and more appointments are appearing; I will just blog as it comes.

Tonight I begin with my MRI results: I went to the appointment with a neutral emotion. A few weeks ago, under frustration, my thoughts were that if the tumors had grown more in the brain, then I would just want to stop the chemo. I don’t know where the attitude changed, but I realized last week that I found myself thinking differently. I reasoned that maybe two months was not long enough time for the medicine to have a chance, so regardless of the MRI results, I was fine with continuing the treatments. However, I didn’t want to be a pessimist, but because I have experienced continuing downside side effects, especially in my right hand, balance and right ear, I assumed the scans would show growth.

I assumed wrong. The MRI showed stable in the brain. 🙂 I still could be experiencing hearing loss and physical side effects from the tumors but that is where it gets tricky, because MRI scans only show growth, not density (if the tumors harden they squeeze more on the nerve)…but since there is no way to calculate this, I will just take the good news: there was no change. What a praise and answer to prayer! Two months ago I saw nothing but growth.

Overall, the MRI of the spine looked stable too. I learned something though; instances such as this amaze me at how much I seem to miss…then when I learn about it, my curiosity comes out as a weird question, “I have that??” It seems to happen more often than not…I seriously should do more study on my disease. Anyway, what I learned yesterday is that the tumor that grows in the spinal cord from C-4 to C-7 area has cysts resting on top and on bottom of the tumor. I never knew this. While the tumor has not grown any nor the bottom cyst, there was more fluid in the cyst on top of the tumor. They don’t know where the extra fluid comes from, but the cyst now rests in the brainstem.

They showed me the scan and the top cyst appears to be “ballooning” from the extra fluid (it literally looks like one too). It took me time to understand this effect of the cysts being like balloons, but basically it is like holding a water balloon and squeezing one end so that the other gets bigger. I asked if the extra fluid could be from the tumors in the brain that were growing…just maybe added pressure, but doctors were not sure.

Besides the physical challenges I typically blog about, the thought occurred to me that because this cyst is now in my brainstem, I should probably have more headaches (but I don’t have any) and more neck pain but that is minimal too. I could have a big list of side effects from the chemo, but so far I have only experienced a minimal few. I will remain on the chemo for another two months, then another MRI. Then go from there.

As my parents helped me today with the phone calls for the next step appointments, I thought of how I am surrounded: I have a circle of doctors who want the best for me, a family that sacrifices their agendas for me, friends who encourage me, prayer warriors who faithfully pray for me, and a mighty God who holds me in His hands. Changes are going to come and I am not the best at shifting gears…but as my Mom told me tonight, “You have to be flexible with this.” So as the calendar starts to overflow with different appointments over the next few weeks, I think I should just drop my expectations of how and when things should be done and just let God write in the details. It will make this complicated chaos more livable.

May all your expectations be frustrated.

May all your plans be thwarted.

May all of your desires be withered into nothingness,

that you may experience the powerlessness and poverty of a child

and sing and dance

in the Love of God the Father, the Son and the Spirit.

~Blessing given to Henri Nouwen by his spiritual mentor

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The Next Chapter

Rainy days have strange effects on me. Some days it makes me groggy as I feel it in my body…especially my right hand. That was my yesterday. I even smashed my index finger that morning within the umbrella as I was closing it; I never felt a thing–just a small pinch but it was only when I looked down to see why the umbrella was not closing did I see my finger jammed.

Another rainy/cloudy day today, but completely opposite. Today was my motivation day. I went supply shopping: paints, paintbrushes, canvases and various add-ons for my upcoming paintings. Yellow Spring’s “Art on the Lawn” festival is only a month away. (More to come on that topic!)

Today I was focused on the broad spectrum of details and errands that needed to get done, even though my right hand seems a bit swollen and my arm is tense. Like an equation, I am not always that full of energy. Yesterday I just focused my attention on one thing at a time. My favorite being a book. I was achy with sick feelings in my intestines, so I made a cup of Chamomile tea and picked up where I left off in Through Gates of Splendor, by Elisabeth Elliot. I was determined to finish the last few chapters.

Growing up, we knew the story of these five missionaries. Nate Saint, Roger Youderian, Ed McCully, Pete Fleming, and Jim Elliot who all followed God’s calling to show and communicate the love of Christ to those tribes in Ecuador that otherwise had no contact with the outside world. These men were at the time, the same age range that I am right now. I sat thinking of this…how these men gave everything for the Gospel. They were taking part of God’s plan to reach the nations, ultimately never seeing the fruit of their labor this side of heaven.

A few months after the deaths of these men, their story was recorded. The first copy of Elisabeth’s book was published in 1956. The edition I pulled off my parent’s bookshelf was the 25th anniversary edition, 1981. As I read the Epilogue II, I came across this conversation that Elisabeth had with Corrie Ten B0om:

“Sometimes,” she told me, “I have said, ‘L0rd, I must have something fresh. I cannot go on telling the old story.’ But the Lord said to me, ‘This is the story I gave you. You tell that one.'” So Corrie encouraged me to go on telling mine. (pg. 266)

And this encouraged me. I set out to write blog entries and feel like I am sharing the same story–repetitious. I want something new. But this is my story. and God wants me to tell it. So a new chapter to my story happened this week:

Tuesday evening I started my first dose of the chemo treatment, Sirolimus.  I take it every 12 hours. I have to be consistent with the time, so I chose to take it around the same time I take my other medicines.  So far I have had no side effects.

The chemo itself is very different from the other chemo treatments I have taken in the past. It does not feel like a chemo. Of course this is the first time I have had to keep medicine in the refrigerator…that could be part of it. The recommendation for taking the solution is to put it in a small 2 oz or so of orange juice stirring it a lot, drinking it and then drinking water or something afterwards. If it tastes the way Marcia says it smells, then I am double blessed as I can’t smell it nor does it change taste of my orange juice. Tonight I thought I would try the other recommendation for taking the medicine: in chocolate syrup. It was disgusting. I think I will just plan on drinking lots of orange juice for a while.

However, this chemo can cause mouth sores and so I have been given mouth care instructions to help prevent or treat these sores. First, a reward: I get an excuse to eat pudding, ice cream, applesauce, yogurt, ice cubes or pop sickles before and/or after as the cold and smooth will help prevent mouth sores. I have always been one for flossing and brushing my teeth after meals so that has not been a problem. They did give me a “recipe” for making my own mouthwash as I am no longer allowed to use store-bought ones due to the alcohol content used…even if it says “Alcohol free,” I am not chancing it.

My diet is much the same as it was before, except now I am a bit more cautious on going and getting that white mocha, as I am to watch my sugar intake. God must still want me to learn self-control. There are a few others on the list that I need to watch–eating red meats (which I don’t do often anyway), watch the different fats in dairy products and limit egg yolks to 3 a week; egg whites are fine. They warn against eating spicy foods as they can cause sores. I need to drink lots of cold fluids, eat lots of fresh fruits and vegetables, and get enough fiber. Even if I wasn’t taking this chemo, it is good eating habits to follow.

I am thankful right now that my body has been tolerating the treatments and will just have to take it one day at a time. I will have labs done every week and my first clinic visit to Children’s is at the end of the month. Do I think chemo is working? I don’t even think I can honestly answer that. My body changes from day-to-day. I note more aches or strains, more numbness or bad balance. There are always things at the back of my mind or new physical challenges to overcome.

My story is not yet complete. I know this. Some chapters seem to fly and others seem to drag on endlessly. Some pages make me laugh, some leave me in suspense and others make me cry. Like reading any book, you have to turn the page at some point to continue reading. If I focus on only one page full of th0se physical sufferings, I will never get to the ending or get to share the new things learned with you. I might just find out that the best part is only a few pages over.

*Elliot, Elizabeth. Through Gates of Splendor. Wheaton, Illinois: Living Books (Tyndale House Publishers), 1981.

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Hearing All into One Ear

You have most likely heard the expression, “In one ear, out the other.” It may not be official living proof, but soon I will get to say that literally speaking (not figurative)…with a more emphasis, “In one ear, transfer to another.” 🙂

Last Friday I went to get my right hearing aid adjusted. Because it is now my only ear I hear from, I needed a bit higher frequency for normal routine living. We did not go overboard on volume, but enough to where I hear voices better, including my own. The minute I started talking in a normal tone of voice was when we knew the volume was just right.

There was also exciting news! Instead of a cochlear implant on the left side, I am now anticipating the arrival of my new Phonak Cros. Phonak is the brand name of my hearing aids as well as other products such as the Cros. The Phonak Cros is a device that looks similar to a hearing aid, but smaller and has a completely different function. cros_bte_single

hearingadvisor.co.uk

This is the Phonak Cros. However, I opted for a light mocha brown instead of blue. It is relatively smaller in size than my hearing aid. There won’t be any need for an ear mold as what you see here goes in my ear. How does it work? Well, since I have no hearing on the left side, I miss cues–mostly dealing with people talking or someone approaching me. The Cros has nothing in part on my left hearing. I will still hear nothing out of this ear even though I wear the device. What happens is that the microphone picks up on the sound (like someone saying “Hello”) and will transfer the noise to my right hearing aid.

If this does not make sense, just know that my right ear will have double time work! It will take time to get accustomed to the direction in which the sound comes; however, I am excited! I am excited to see how it works at the dinner table, in my shopping trips, listening to music in my car, Muffy meowing…it will be interesting!

When you depend on technology for physical needs, it can get frustrating. It is never a surprise to me anymore when in the middle of an important conversation, my hearing aid battery just dies leaving me to transition to full lip-reading. But for all the times of tears, hearing aid appointments, and cost of batteries (I might add), there are blessings. Not only will this new arrangement (in time) help me maintain a bit of social grace, but also the Cros will be linked to my right hearing aid, as was my left hearing aid before, so where I can switch the settings and volume with my left hand as it is my stronger hand.

God is my stronger hand. As I learn to depend on Him daily, I see there is still so much to learn. “Call to me and I will answer you, and will tell you great and hidden things that you have not known,” Jeremiah 33:3. Like the Phonak Cros, God links together the my disabilities with His abilities and carries them all in His hand. It does not stop my life from tears, doctor appointments, and the cost of following God into the unknown but when I do, there are blessings.

I am still learning this dependency–

…It’s amazing
How I forget
Can’t live my life
For lack of it
But the Light of day
I’ve always known
It’s in my heart
I’m not alone

Speak to me
Tell me all the things I need to know
I want to hear You now
Can You speak to me
I’ve opened up Your Word to free me
I want to hear You now

Make Your wisdom clear
The words I hold so dear
Bring the light into my dark
I hide them inside my heart…

*Audio Adrenaline. “Speak to Me.” Lift. 2001.

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I Breathe

DSCN2206

“Today” by Iona

– – –

Today the grass is greener

than I have ever seen

Today the sky is bluer

than it has ever been

And Today my heart is breathing

like I’ve never felt it beat

And Today flowers are growing

from the ground beneath my feet

– – –

Today my hope is stronger

and the visions clearer

To walk in Love eternal

the path that takes me nearer

And to You the music’s playing

like it has never done

And to You my feet are dancing

underneath the sun

– – –

In You I Live

In You I Live

In You I Live

and breathe

This song is exactly opposite of what I actually felt this morning. The day is indeed beautiful with the sky bluer, the grass greener and flowers growing around the back patio. And inside myself I felt distant from this beauty of the day. I did not feel like dancing, making music in praise. I felt heavy…burdened. Sorrow instead of joy in the morning.

Last night, I laid it all out. In my conversation with my dad, we discussed everything that I could think of at the moment…this decision about the chemo treatments is not just the treatments. I realized it goes so much deeper than that…job, living, safety factors as my body physically fades, side effects of medicines, what happens after I can no longer be on certain medicines, independence and dependence decisions, current pains, current emotions, hopes that seem lost…

In a day, I don’t think these things in this much depth. But because I fell asleep last night still questioning…today, the heaviness lingered. I started making my morning coffee and asked God, “What happened to my joy?” I remembered a verse where it talks about our sorrow turning to joy–so I set out to find it. I should have known it was in the book of Jeremiah. In chapter 29, God assures the Israelites that He has a plan for their future, one that prospers and brings hope (29:11).

This morning I felt too that I was in bondage…exile from former things, out of my comfort and asking God, “Where are You? Why am I here in this place suffering like this? And what is going to happen in my future?” Seems last night that is all that happened–I just asked a lot of questions. My earthly father put his arm around my shoulder as I wept. He could only answer my questions honestly saying, “I don’t know.” But my Heavenly Father says, “This may not make sense at the moment. I know your pain, sorrow, confusion. Seek me and trust me. I love you and have the perfect plan for you. Your sorrow will soon turn to joy.”

Then I found my verse that I was seeking–Jeremiah 31:12-14 (The Voice):

“The redeemed will return home and shout for joy from the top of Mount Zion; they will shine with the sheer goodness of the Eternal— The harvests of grain, wine, and oil; the healthy flocks and herds. Their lives will be like a lush, well-watered garden. From that day on, they will never know sorrow. Young women will dance for joy; young men will join them, old ones too. For I will turn their mourning into joy. I will comfort My people and replace their sorrow with gladness. From the overflow of sacrifices, I will satisfy My priests; All My people will feast on My goodness.”

My own visions are unclear, but seeing through eyes of faith gives freedom from this sorrow–maybe not physically, but in my soul. I learn to live. And I breathe.

We have the idea that God is going to do some exceptional thing— that He is preparing and equipping us for some extraordinary work in the future. But as we grow in His grace we find that God is glorifying Himself here and now, at this very moment. If we have God’s assurance behind us, the most amazing strength becomes ours, and we learn to sing, glorifying Him even in the ordinary days and ways of life.

~Oswald Chambers, My Utmost for His Highest, June 4.

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First Day of Autumn

My mom has a Colorado scenic calender that hangs near the kitchen. This month’s picture is titled, “Little Snake River sunrise.” The sun shines on the dry mountain peaks giving them a tan color for the horizon. The trees shimmer with orange and yellow. The sky is blue. You can see the fleeting trace of dark clouds at the top of the picture which are being replaced by puffy white ones that lay low in the sky by the peaks. And there is a double rainbow. I notice that I tend to stare more at pictures or paintings these days. I soak in the color schemes or theme. I try to visualize what the artist had in mind. This picture was the same. Just one of those that makes you wonder if the photographer purposely waited until sunrise to take the picture or whether it was spontaneous. I go with the latter.

Like the picture above. It was taken last Autumn, a day after one of my chemo treatments. My sister and two college friends were going to Yellow Springs to enjoy the air, colors and tourism. They really wanted me to go. So I went. I had a great time. This picture was spontaneous. Look at how perfect it is. Everything from color coordinating, our hand positions (that was not planned either) to my eyes peeking out from the leaf. 🙂 I thought the other two were doing the same. I don’t think the picture would have turned out as great if we planned it. And I love to plan! Ask my family…it drives them nuts. There is nothing wrong with planning ahead. Ask event coordinators. I am sure the word procrastination is never mentioned during their interviews. It is actually a job I could see myself thriving in, minus the telephone calls. Aside from profession, when you plan ahead based on circumstances, it is harder to embrace change. Trust me, it seems to be my life’s bad habit.

I wrote a post at the beginning of Spring about how my vision is blurry when I take my eyes off Jesus. Two seasons later I see parallelism to my future much like a leaf. A leaf grows in the Spring. It nourishes in the summer, and it dies in the Fall. Its beauty peaks a few days before it sees the ground. Have you ever watched a leaf fall from the tree to the ground? How is a leaf to know the timing of when it will be set free or the circumstances around it that will shape the direction of its fall?

Not that I am falling (well, ok, I do physically when I twist my ankle), but the circumstances around me seem to be falling. At least in my leaf-like eyes. Circumstances such as my last day of work is in exactly two weeks with no prospects open for something new. Circumstances such as my next MRI is October 22nd. To be honest, thoughts cross my mind frequently of what those results will show and whether or not I will have to restart another treatment. Circumstances such as finding an apartment, fixing my car, putting my paintings in coffee shops, or where God needs me to serve in a ministry. Circumstances–temporary things that shift like the wind. Circumstances that weigh heavy on the heart, much like the tug of gravity on a leaf. Circumstances that are out of my control or leave me confused.

I cannot see what lies ahead, but I have to trust in God’s timing. It is perfect. It is not spontaneous like human plans. It is tenderly planned to meet all my needs. He sees the greater picture. I see the spontaneous moments piece by peace. I must admit that as much as I try to keep my eyes on Jesus, I am more like Peter who looked down at the roaring waves beneath his feet. Life is walking by faith. “Now faith is the substance of things hoped for, the evidence of things not seen,” Hebrews 11:1.

And faith is much like Autumn. Change is here. Change is not always a strand of negative effects. Without the change of colors and falling leaves, how will Winter ever arrive? I must embrace change. I must embrace the Autumn in my life, for even when everything around me seems to be falling–it is beautiful. And so I wait. I wait for God’s timing, because if a leaf falls too soon it can be trampled. If it falls too late, it can wither. I wait for His release of beauty as I enter the Autumn winds.

Well, sometimes my life just don’t make sense at all

When the mountains look so big and my faith just seems so small

CHORUS: So hold me Jesus, ’cause I’m shaking like a leaf

You have been King of my glory

Won’t You be my Prince of Peace

And I wake up in the night and feel the dark

It’s so hot inside my soul, I swear there must be blisters on my heart

CHORUS

Surrender don’t come natural to me

I’d rather fight You for something I don’t really want

Than to take what You give that I need

And I’ve beat my head against so many walls

Now I’m falling down, I’m falling on my knees

And this Salvation Army band

Is playing this hymn

And Your grace rings out so deep

It makes my resistance seem so thin

CHORUS

Rich Mullins. “Hold Me Jesus.” A Liturgy, a Legacy, & a Ragamuffin Band. (1993).

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